Life with a chronic illness means a lot of uncertainty. A lot of waiting. It comes with the turf- I haven’t met a single person who doesn’t struggle to some degree with the uncertainty and the waiting game. Bodies are unpredictable, so we don’t know how we will be from day to day.
Recently, I’ve been struggling even more so with this. I’ve been dealing with severe allergies, requiring me to wear a mask and be extremely careful with what I come into contact with. Six bouts of anaphylaxis in the past few weeks..you could say I’m a little on edge.
It can be quite scary and unsettling when you wake up and have no idea whether you will have a good day, or whether you’ll be in the ER needing breathing treatments and epinephrine. Additionally, sometimes it feels like despite all the difficult and dangerous symptoms, you and your medical team aren’t doing enough to fix the problem. Do not pass go, do not collect 200$.
I’ve really had to remember the past few weeks that I can and will get through this. These are some tips for dealing with it all.
One of the most important things to remember when you’re in this situation is to stay calm. Stress impacts how your body will respond. I know it’s hard to stay calm when you are experiencing scary symptoms (this is something I struggle with) but keeping your mind calm is helpful.
Distract yourself when symptoms are tough. This is something that helps me chill out when I’m worried or upset. Watch a movie, color in a coloring book, listen to an audiobook or talk to a friend. Find something that works for you, and use it.
Focus on the positives in the day. Small improvements are still improvements. This is so hard to remember, especially when it seems like you are sliding backwards. Even the daily improvements are a huge deal. Sometimes when I am struggling, I try to make a mental list of what has gotten better. This helps me stay positive and motivated.
Reward yourself. This is not easy! Dealing with symptoms and medical treatment on a daily basis is draining. Try small rewards that you can focus on and use to motivate yourself. For example, when I finish physical therapy, I will reward myself by watching an episode of a show.
Remember: your journey is your own. Comparing yourself to others and their health is not productive, and will just end up making you feel worse. Everyone has a different response to pain, to symptoms, and to stress. Someone you know may have similar symptoms but may have a completely different way of dealing with it. Always remember that suffering is subjective. There is no way to compare because everyone’s health is completely unique.
It’s not fun or easy to deal with unpredictable symptoms. It’s hard, and can wear you down mentally and physically. But remember… you have survived 100% of your worst days. You’re doing great.
If I could go back and tell myself one thing when I first got sick, it would be to find a new normal. And to try and accept the new normal.Sleeping all the time? That’s okay, that’s your new normal. Can’t walk without limping? That’s okay, it’s just a new normal. Using a wheelchair? New normal. Recently I was told to look into a new disorder, as a possible answer. I wasn’t phased at all, started doing research, and then it dawned on me…after almost 3 years of constantly being sick, this is my normal. And I’m okay with that. So if you’re just getting sick, or are struggling with something, find a new normal. Don’t forget the old one, but try not to expect your body to be capable of it. It’s impossible when everything changes, especially when that change is drastic- healthy, to sick, in a short time. I could have never imagined 3 years ago my normal would involve researching rare diseases, and administering meds through a feeding tube…but it does. My normal is not what I would have wished it to be, but it is one where I can live and thrive and be happy. “Normal” is after all, a very relative term.
And if your new “normal” feels not so normal at all, remember that you are not alone. And remember that things do get better.
After all, I’m certainly still here.